Endometriosis UK
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Hysterectomy and surgery for DIE

I got diagnosed with severe endometriosis (DIE) in June 2017 and after long consideration and because of extensive adenomyosis I will get a major operation on March 2nd. I will get a hysterectomy and the endometriosis will be cut and burned away.

Rationally I agree with the hysterectomy but becoming a mother is now very very far away 😢.

My hubby and I look for a surrogate now.

Would like to hear experiences after such a major surgery. When were you able to regain daily normal life operations, travel in a car or plane for some hours or more, ....?

I am 42 y/o, happily married and have an unknown collagen disease.

3 Replies
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Big hugs Patricia it's a big shock to discover you have severe endo.

Firstly are you being treated in a bsge accredited endo centre?

It sounds a little to me that you're not quite fully reconciled to a hysterectomy. Have you had any counselling or a second specialist opinion to help give you more peace of mind as its an irrevocable procedure?

Have you had zoladex to check if your symptoms improved with ovary removal? Hysterectomy does not always cure DIE and neither does oopherectomy as sometimes it can self generate its own oestrogen supply.

I had an extensive major op for a DIE nodule attaching my vagina to my bowel and extensive adhesions. I was offered a oopherectomy but decided not to do it. I'm the same age as you and was just a bit uncomfortable with the longer term risks.

contemporaryobgyn.modernmed...

I didn't have the hysterectomy but even so for me it's been a long recovery journey. My op itself went well but the nodule was much bigger than expected and had badly damaged my vagina so I had to have a partial vulvectomy and repair. I lost 4cm2 of my vagina. Unfortunately I developed viral meningitis 4 days after spent a week in hospital and lost a lot of weight to become clinically underweight. I also developed coxxodynia nerve pain into my legs, severe reflux esophagitis and had what I believe was post trauma anxiety attacks . I was meant to start back at work after 6 weeks but it's been 6 or 7 months. I'm much better but am still battling chronic fatigue and joint pain. A misguided attempt to go back after 4 months before I was ready caused a relapse so it took good while before I felt I'd turned the corner.

I was definitely unlucky so probably you'll have a much smoother ride than I did, but my advice would be to destress as much as possible it massively affect the body and recovery speed and also accept that it may take months rather than weeks before you really feel you are getting back to new normal, even if you are up and functioning well before.

Good luck with everything. Xxx

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Most likely 6-8 weeks give your body time to heal. You can travel in a car but I wouldn't advice prolonged travelling as it like 4-6 hours sitting in a car as it will increase your chances of getting dvt(dep vein thrombosis). Plane same as well to be on adage side .Don't rush and don't lift heavy things during that time frame. Take it easy ,eat more protein like pulses ,beans, meat , fish increase your fibre intake more veggie and fruits to prevent constipation. Drink plenty of water, fresh juice and walk around the house .

Goodluck and all the best in your future🌻

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The recovery period isn’t that long at all but it’s important that you take it easy and really look after yourself. I agree though with the others that you have time to come to terms with what’s going to happen to you and to your body. I recovered in a matter of weeks but I had made my peace with what was going to happen. That’s not to say it’s been easy though. I wish you every luck with your operation and I hope that it helps you long term xx

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